The baby living with half a heart

IT'S ironic that Joshua McGivern breaks hearts with every one of his big toothy smiles.

The adorable nine-month-old Queensland boy carries just half a heart in his little chest.

The zipper scars are the only clue that he has hypoplastic left heart syndrome, where the left side of the organ has not developed. Every beat is a miracle.

There is no cure for HLHS, but doctors will attempt to prolong his life with surgical palliation.

This involves three rounds of open-heart surgery - Joshua has already fought bravely through two.

Joshua in intensive care

Joshua’s smile now melts hearts. Picture: Adam Head

The heart normally has two sides, each with a collecting chamber and pumping chamber. The right side of the heart collects low oxygen blood returning from the body and this blood is pumped to the lungs to collect oxygen. The left side of the heart collects high oxygen blood returning to the heart from the lungs and pumps it to the body. The operations are designed to rearrange the heart's plumbing.

HLHS is just one type of congenital heart defect which is the leading cause of death in babies in Australia.

"The diagnosis has been the biggest shock, and it is hard for the mind not to go to the thought that any day his heart will give up," mother Elaine McGivern told The Courier-Mail.

"I have had to work through this and learn to enjoy every single day. Joshua is a joy.

"He will have his third and final operation when he turns four.

"There is hope that medical science will find a cure and Joshua will live long enough to benefit from any breakthrough.

Joshua’s latest heart scan

"I have read of cases of people living for a long time following the surgeries."

Joshua spent the first 19 weeks of his life fighting hard at Queensland Children's Hospital.

"We got a lot of support at the hospital from the people from Heartkids, which is a non-government-funded charity focused on improving the lives and futures of those affected by congenital heart disease," Ms McGivern said.

"We would have been lost without them."

Eight babies are born in Australia each day with heart conditions.

"I can't ever give up fighting for Joshua, and funding for research is a must," Ms McGivern said.

"I will be running the Gold Coast Marathon with three close friends to raise money for Heartkids."